Sometimes you just have to love your way through.

My son is 16. He is semi-verbal on the autism spectrum. He was diagnosed as severe. Sometimes he can speak a little. Sometimes he can’t. Sometimes he has good days. Sometimes he does not. There are hopeful moments. Like this year he is starting to trace letters for the first time ever! A huge milestone. We celebrate those achievements.

Once in a while, I send him messages from my phone and he sends me a sweet word back. Other times there’s silence. We are grateful for the times he has some language.

Sometimes it’s hard, like really hard, the hardest of hards and it hurts my heart and makes it so heavy. I worry for the future when we’re gone. Who will take over? Who will love him as much as I do but be able to bear this all too? Sometimes it’s confusing. Like when he cries and we don’t know why. Is he in pain? Is he sick? Is he just sad? He can’t tell us. We just guess and love our way through it all.

Sometimes he seems so capable and we’re like, ‘We got this! It’s not so hard after all!’ Then he has regressions. We watch as he slowly loses a skill that he worked so incredibly hard at. It just slips away. Sometimes it comes back. Other times we have to start from square one.

We change bedding almost every day. Sometimes, we need to change clothes during the day too. Sixteen years in. You can’t really call it ‘potty training’ anymore can you? It’s not about the laundry. It’s the setbacks after working so hard to overcome obstacles and difficulties. It’s feeling like you finally made it out of the baby stages only to go back again. It’s the regressions without explanations or reasons. It’s the constant ‘why’ without answers. It’s the starting over again and again. It’s going backward when everyone else seems to be going forward. Sometimes it’s everything at once. Beautiful, heartbreaking, hard work, celebrations, hitting milestones, regressions, starting over. It’s a constant roller coaster of emotions. But the one constant that will never change is our enormous love. A love so strong it carries us through.

This post originally appeared on https://www.facebook.com/theautismride.
Feature image via iStock

Hi! My name is Laura and I'm a mom of two beautiful kids in Vancouver, Canada. I write a blog on Facebook called The Autism Ride, all about the ups and downs in life with our teenaged son on the spectrum.

Another boy will meet the world, because Danielle Fishel is pregnant! The former Boy Meets World star turned 40 today and had a sweet announcement ready to celebrate. She’s expecting her second son with husband Jensen Karp.

“I couldn’t be more grateful to enter my 40’s with my amazing husband and son, excitedly expecting the arrival of baby boy #2. My birthday wish is for all of you to tell someone how much you love them and walk through today with more patience than you normally might,” Fishel noted in her caption on Instagram, accompanying a glowing bump photo.

Fishel and Karp married in 2018 and their first son, Adler Lawrence, was born a month before his due date in June 2019. The infant faced some health scares and spent 21 days in the neonatal intensive care unit, after being diagnosed with chylothorax. Today he’s healthy, happy and on his way to big brother status.

Proud dad Karp also posted a sweet tribute on his Instagram, penning “Happy 40th birthday to my life partner, a team captain and the greatest mom to our now soon to be 2 boys. She believes in our squad and even when I held a newborn Adler like he was a fragile piece of china for the 4 first months, she had the patience and care of a saint.” We’re looking forward to watching the Fishel Karp family grow!

––Sarah Shebek

Feature photo: Joe Seer / Shutterstock.com

 

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In a year of many ups and downs—both for my family and so many others around the world—I have learned to answer the question “How are you?” very honestly. Why waste time with the niceties of replying with the default answer of “I’m good” when I may not be feeling that good inside? My preference is to be open and honest when I am asked “How are you?” because what I have discovered is that the people in my life who truly care about me will want to hear my real answer, which is “I’m okay.” Yes, just okay. From my perspective, this pandemic seems to have brought out both the worst and the best in people. You learn who unconditionally has your back and whose love was perhaps only conditional. 

My family has been on high alert since the pandemic began over a year ago, and with good reason. I’ve always had the ability to work from home, as my job as a Marketing Communications Manager for a global dairy company allowed for it. My challenge is that I am diagnosed with Hashimoto’s disease, an autoimmune disorder that puts me in the at-risk part of the population. My husband, Brent, works outside of the home as a contractor, so he’s needed to be extra cautious during the past year. 

We have two amazing children, Noah and Amelia (Mia). Noah recently graduated from eighth grade without all the fanfare and celebration that typically comes with such an event. To start high school, he opted to stay home because there had been COVID cases at his school and he didn’t want to put his family at risk. Noah is also a competitive swimmer at the club and high school levels. Thank god he has an outlet to keep him active, grounded, and safely social. The other swim moms and I have made every effort to keep the kids connected and in the pool as much as possible over the last year; we help each other in the process. 

Amelia is our angel with special needs. When she was three weeks old, she suffered a massive seizure that led to acute ischemic stroke. The doctors discovered that she has a complex vein of Galen malformation, quadriplegic cerebral palsy, and acute complex brain injury, which means a high level of care is needed in case of seizures. Amelia is nine years old now and needs constant attention and care. She is non-verbal and on a specialized diet. She’s e-learning for a few hours a day with the help of a nanny that works with her three days a week while I handle the other two. A few months ago, she started randomly vomiting and her doctors haven’t been able to figure out the cause of the issue. She’s been in and out of the hospital with my husband by her side for the most part. It’s scary, and I just want my husband and daughter home for the long term.

Needless to say, the past year has been both mentally and emotionally challenging for me, and I look for ways to maintain grace and balance each day. My workouts on the Peloton have been an outlet where I can find a release and ugly-cry if the mood strikes. I’ve taken care of my physical self, however, my emotional self might need some work still. Yet, I’m learning that perhaps I have more strength and resilience in me than I thought I did. 

What’s been perhaps the most joyous and heart-breaking symptom of our situation is that it’s enabled me to clearly see who matters most in my space—who my true friends are. It’s been both eye-opening and cathartic. There have been moments when you need someone and they aren’t there. I acknowledge that everyone is going through different levels of crisis—and my family has to be extremely careful 24/7—but it’s difficult to watch friendships that I thought were so strong suddenly disappear. It’s nothing that I did, and I have no idea what they are going through, but there’s a feeling of loss and grief as a result of this. Even in the midst of all this, we still have so much to be grateful for. We’re still here, we are together, and we are taking the necessary precautions for our family. 

Peeking through the clouds of lost friendships are some new ones. Strong communities of people have emerged in my life. I have bonded with some incredibly supportive people from the Peloton community and I’ve never even met them in person. Some of those folks also have children with special needs, and it’s that kind of supportive community that I never knew I needed. My very best friends whom I have known since grade school are my constants and I am beyond grateful for these women. The moms from my son’s swim team have become a second family to me, as we all try to support our children during this time. I can still see family members and my best friends over Facetime or Zoom, and I’ve even reconnected with people during all of this. I now have these unique and caring support networks that keep me going, but there is still a sense of loss in all of it. 

But it’s not just us—everyone is going through their own personal journey during this time. It’s a global issue. I’ve learned that I have a voice and I’m learning how to use it, too. Writing and speaking are helping me build confidence while also being vulnerable. I’ve learned to answer the “How are you?” question honestly, and I’ve found it helps me relate to other people and build connections with them. People who make the effort during this time are people who truly have your back. As I’ve learned through this challenging time, the one thing that truly is what perspective you have and how you choose to use it.

Megan Malagoli Patterson
Tinybeans Voices Contributor

My husband Brent and I have two children - Noah and Amelia, also known as “Miracle Mia”. I can often be found reading a book, running, or sweating it out at my local OrangeTheory. I also enjoy traveling and have a deep passion for raising funds and volunteering.

Photo: Cody Speaks

I think back to how we got here and how great Cody is doing and it’s hard to remember the really hard times. The passage of time lessens that pain and for that I am grateful. I do remember for so long I just got up day after day putting one foot in front of the other just doing but not really understanding where we were going or if it truly will get better. Just in survival mode really.

As I sit here thinking how far we’ve all come and how we’re all still together loving each other and still learning from one another I am grateful. I used to pray every night the same prayer to simply make everything better—to simply make my son better. I was bartering with God that I would give absolutely anything to help my son money, health, my life—anything! I would scream this over and over.

Instead, I was given insight, patience, wisdom and perception of better understanding. I now know that’s what I should have been praying for all along.

I am grateful for so many things.

I am grateful I haven’t lost my mind.

I am grateful I learned how to connect with my son.

I am grateful I now know this different life can be amazing and I’m in no way saying it’s easy but whose life is easy anyway?

I guarantee every single person has that “something”—their own struggle. I count my blessings every night when I’m struggling with anything whether it’s a thought or circumstance—still I count them. If I went back in time and could have looked into my future I don’t think I would have believed how far I would come or how far Cody would come. I was sure I wouldn’t make it but I have. We all have.

Our family has been through so much in this journey and if you’re living this you completely understand. Learning how to navigate the world when things are different and learning what to be grateful for. Cody is now able to tolerate shopping and even window shopping. I remember when he was little the screaming—the tantrums—the floppy drops—the running and just how exhausting it was and how every single time we went out it was the same as the time before, never seeming to get any better.

I’m telling you it can change and it has changed. But I am also telling you it has not been by accident this has happened or by some miracle. It has simply been for the sheer fact that we have worked so very hard to achieve these things. Think of it this way: If you were never taught how to act or practiced better behavior or given the tools when you needed them where would you be? We all need tools and coping strategies and to be taught how to navigate the world and simply to be great examples. Study and learn and be that great example and figure out how best to relate to others that perceive the world differently. Try to see from a different view and maybe just maybe you’ll have a better understanding. Most of all love all no matter what differences and be grateful we can learn from one another.

 

feature image via iStock

I am a parent to a son who is diagnosed with nonverbal severe autism with ID. I share our journey on facebook Cody Speaks. Cody has come farther than we were ever told. We were told to institutionalize him he would never learn. He learns every day and speaks.

Almost ten years ago, my family made eating dinner together a priority. My life felt crazy busy at the time as I juggled work, two young children, school, and life. I remember wanting to feel less frazzled. I longed to be more grounded and connected with my family. About that time, I stumbled upon research that shared the benefits of eating together. Studies found that families that eat dinner together several times a week experience the following.

Benefits of Family Dinner

  • Better academic performance
  • Higher self-esteem
  • A greater sense of resilience
  • Lower risk of substance abuse
  • Lower risk of teen pregnancy
  • Lower risk of depression
  • Lower likelihood of developing eating disorders
  • Lower rates of obesity

So we started. Up until that point, our family dinners were fast and sporadic. The last thing my two toddlers wanted to do was sit down for dinner. But by ages 3 and 5, spending more time at the table was a possibility.

I heard about using “Rose, Bud, Thorn” as a way for families to connect and share. During dinner, everyone shared their “Rose” for the day or something that went well. Their “Bud,” or something they were excited about. And their “Thorn,” a difficult part of their day. My kids enjoyed these interactions, and it gave me a deeper peek into their world.

Soon, we added other topics. One night, I brought four small journals to dinner. With some eye rolls and resistance, we each wrote down something we were grateful for that day. My youngest daughter didn’t feel like writing, so she drew a picture instead.

These gratitude journals are still near our kitchen table today. We pull them out periodically and add to them. My kids love looking back at what they wrote years ago. Writing in these journals seems to shift our focus and remind us of the many good things in our life.

Looking back over the past decade, I see that dinnertime is one of our most meaningful family rituals. Time to stop whatever we are doing and sit down together. Time to listen and learn about each other. Time to connect.

I’ve found that the following ground rules help to set the tone for our dinners:

  • Make the dinner table a safe space. Practice respectful listening. Do not make fun of or embarrass anyone about what they share. (This rule has grown into a house rule too.)
  • Turn off and put away devices. Make the dinner table a no phone, tablet, or TV zone.
  • Make the conversations fun, especially as you get started. (Later, families may delve into more serious topics and discussions.)
  • Choosing not to respond is okay. Allow family members just to listen if they prefer not to share.
  • To start, introduce just one topic at each dinner. From there, decide what works best for your family.

Here are a few topics that my family discussed over the years. When my kids were younger, we prioritized fun and engaging topics.

Dinner Topics for Families with Young Children

  • Rose, Bud, Thorn (Best part of your day? Something you are excited about? Toughest part of your day?)
  • An act of kindness, big or small, you noticed or experienced today?
  • What are you most grateful for today?
  • What is something you are proud of?

Dinner Topics for Families with Tweens and Teens

  • What are you most excited about? What are you most nervous about?
  • Most interesting part of your day? Most awkward part of your day?
  • What inspires you?
  • What makes you feel loved? 
  • Which emotion is most difficult for you to express?

Over the years, I’ve shared many of my family’s dinner conversations. Here are a few of those posts:

Because of the pandemic and social distancing, my family is spending more time together these days. But our family dinners are still a priority. Over dinner, I’ve learned how difficult the pandemic has been for each of my family members. I’ve come to understand the impact it’s had on my kids’ social and emotional worlds. This knowledge has helped me better support the people I love the most during this stressful time. And helped me stay grounded too.

This post originally appeared on https://jessicaspeer.com/blog-jessica-speer/.

Jessica Speer is the author of BFF or NRF (Not Really Friends)? Girls Guide to Happy Friendships. Combining humor, the voices of kids, and research-based explanations, Jessica unpacks topics in ways that connect with tweens and teens. She’s the mother of two and has a Master’s Degree in Social Sciences.    

Between the bright lights, loud sounds and everything else that goes on inside, it’s easy to see how Chuck E. Cheese’s can overwhelm just about anyone. But for kids with autism or special needs, the sensory overload can be waaaay too much. To help, Chuck E. Cheese’s is bringing back Sensory Sensitive Sundays for kids with special needs.

Beginning Sun. Apr. 11, Chuck E. Cheese will open two hours early, just for kids with special needs at select locations. The program will continue throughout April on Sundays and for the remainder of 2021.

photo: Chuck E. Cheese

Sensory Sensitive Sundays (at participating locations only) will feature dimmed lighting, quieter dining and entertainment environment and a sensory-friendly arcade experience. Along with the sensory sensitive setting, the chain’s caring staff will be on-hand to help out and make the experience memorable for each and every guest.

Also starting today, Chuck E. Cheese guests can donate to Autism Speaks with every purchase. At the register, round up your purchases to the nearest dollar, and all contributions will support Autism Speaks’ research, advocacy efforts, programs and services.

“At Autism Speaks, we are so grateful to have supporters like Chuck E. Cheese who help drive our mission by creating inclusive environments for all kids,” said Autism Speaks Vice President of Supports and Services Valerie Paradiz. “Their Sensory Sensitive Sundays and round-up campaign bring us one step closer to our vision of a world where all people with autism can reach their full potential.”

If you’re not sure which locations near you will offer this event, get the list right here.

—Erica Loop & Karly Wood

Feature photo: gsheldon via iStock

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IKEA recently announced the winners of the brand’s latest Soft Toy Drawing Competition. Eleven-year-old Nick from St. Louis is the first American since 2017 to win one of the top honors in this creative contest!

The SAGOSKATT collection from Swedish retailer IKEA is a limited-edition collection of soft toys made for kids, by kids. Each year children from around the world are invited to submit their designs, featuring drawings of a would-be imaginatively awesome plush.

This year’s competition brought in more than 66,000 entries—with five chosen as the top winners. Each winner will have their drawing turned into an IRL IKEA toy! One hundred percent of the proceeds from the SAGOSKATT line are donated to local children’s right to play initiatives.

Along with 11-year-old Nick (who won for his “Bird” design), the other global winners were “Sandwich friends” designed by nine-year-old Audrey from Canada, “Cat” designed by eight-year-old Liepa from Lithuania, “Fried egg” designed by seven-year-old Zosia from Poland and “Mermaid dog” designed by nine-year-old Savva from Russia.

Jorge Omar Santoyo Henaine, Product Design Developer for Children’s IKEA, IKEA of Sweden, said in a press release, “I feel very lucky and grateful to be part of the team involved in the SAGOSKATT project. The whole concept of ’for children by children to help children’ is something that makes me extremely proud.”

Santoyo Henaine continued, “The endless creativity in kids is amazing. Each year we are impressed by the amount of unique, cool and fun creations we receive. We wish we could make all of them! When selecting the winners, we consider a lot of  important criteria, for instance, how unique, colorful and expressive the drawing is, if it can be transformed into a soft toy for mass production and if we can secure the safety requirements for the future toy.”

Find the SAGOSKATT toy line in stores and on IKEA’s website.

—Erica Loop

Photos courtesy of IKEA

 

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woman and man in mini van

photo: The Althaus Life Blog

In a world where the answer is always at your fingertips, and everyone has an opinion of you, it’s hard to figure out who you are sometimes. It’s even harder to find that inner voice that reminds you that you are strong, funny, and worthy with the outside noise of jealousy and disgust is always looming.

We are a very “Keeping up with Joneses” generation. When planning out my life, I had that mentality. I wanted my life to be better than I ever could have imagined and I have a very specific, and very vain list of how I was going to make it so. From marrying a 6’5 athlete who loved his mother to wanting to live in a neighborhood in the swankiest area of where we live, I had very low, materialistic expectations of how I wanted to live my life. Those were my ideas of success.

Then I dated 6’5 losers, the area I had dreamed of living in turned out to be nothing but full of holier than thou hypocrite judgers that would make life miserable. Even if we could afford to live in that area I’d take a hard pass, fast. The life I have isn’t what I pictured or what I thought I wanted but it turned out to be everything I wanted. I’ve fought hard for the simple life that in my earlier years I thought I wouldn’t have wanted. I married the quiet guy who makes me laugh on the daily, supports any crazy idea I may have and loves me and our kids fiercely.

We live in a tiny ranch house. We’ve looked to upgrade it in big ways but at the end of the day, our tiny ranch house is perfect for us. We live in a village that’s mostly families who have the same, full of contentment dream. One thing I’ve learned over the years and that’s become more blatantly obvious is it’s not the things that matter but the people and how the area you live in makes you feel. Where we live it’s less “Keeping up with Joneses,” and more keeping up with our kids and their needs and dreams.

It’s less, “We have to get Cam here and Roy there” and more filling our lives with activities we all love and more taking it easy to figure out what our kids like and focus on that. I love the simple life we’ve built. It’s still challenging thanks to the autism side of it and the three-nager we currently have but it’s a crazy fun balance that I wouldn’t change.

I hope my younger self is proud of the way our life took a turn. It’s not a life she would have ever pictured but it’s a good one. So marry the nerdy guy. The one that lets you unapologetically yourself. The one that seems to have his life together way more than you. The one that shows up at midnight at your darkest moment. The one who sleeps on the couch with you when you’re too sick to get to bed. The one that still makes you laugh, post-kids, and you wet your pants a little. The one who speaks three-nager and is the best hostage negotiator.

The life that you imagined doesn’t have to be the life you have. The life I have is a million times better than what I ever dreamed. I’m grateful that I said yes to the short, quiet guy who loves his own mama but loves the family he’s made more. We have everything we need. We work hard together as a team which is what I needed. There are days we don’t like each other. But we still show up. I think that’s the secret. You show up on your worst day so your partner can be their best. We are always making what feels like life and death decisions. We believe in Murphy’s law a lot. We cry until we laugh. Laugh until we cry. It can be the dumbest thing that we’re laughing about.

If you’re single. I hope you find that person. It’s not about materialistic things. It’s about the person who shows up for you when the world turns its back on you. They are the ones who lay on the floor with you when you aren’t sure how you’re going to take your next breath. They love you and your kids fiercely. They admit when things are hard or when they’re struggling. They support you in your dreams and goals no matter how crazy they may sound. I hope you marry the person that makes you feel all the things—the person that allows you to be unapologetically you.

Jeremy is that for me. I didn’t believe in soulmates and love at first sight. I believed you truly could make it work with anyone if you put the effort in. Then one random Tuesday, a quiet, sweet guy walked into a coffee shop and my heart was like, “Well he’s different in a way that I need in my life!” and here we are almost 8 years later. I’m blessed beyond measure because a guy with his life together took a chance on me the biggest hot mess. I’ll forever be grateful.

This post originally appeared on The Althaus Life Blog.

 

Lindsey is a mom, wife, and blogger at The Althaus Life. She lives in Ohio with her husband and 2 children. Lindsey is grateful all things and to be able to chronicle her beautifully broken laugh til you cry cry until you laugh life.

Our house is in shambles.

Walls have been knocked down, studs revealed, old wiring uncovered. The mysterious pipe in the pantry, well, turns out that is a gas line. “We wondered about that,” I laugh with my contractors as we pivot to deal with the house’s secrets now laid bare.

We are renovating and adding on, squeezing our family of five (plus two pets) into an even smaller footprint for a time. A little over a year ago, we lounged in 2500 square feet; now, we are getting along just fine in about 1000. Though I’ll admit, I am quite grateful for in-person learning and my husband’s special dispensation to work in the office. Still, I marvel at the ability of humans to adapt. Perhaps we don’t need all that we think we need?

Our refrigerator is within reach of the person seated at the end of the dining table. “Pass the butter” has taken on a whole new meaning. Our main walkway involves squeezing between people hunched over their plastic bowls and spoons and the piano that is wedged under the window. Our cat thinks the new construction is his personal playground. Our dog has made friends with all of the specialty subcontractors, from the electricians to the framing crew.

All this discomfort, inconvenience, and mess makes me oddly excited. You see, I know what is coming in a few months. A more spacious, comfortable, well-planned home for our family, where we can welcome friends and neighbors. I find it shockingly easy to smile and laugh at the chaos and noise because I know what lies ahead.

Our children are surrounded by inconvenience. Their possessions are in storage. Two are sharing a room. No one, including myself, really knows where anything is right now. Plastic tarps are hanging everywhere, so we “zipper” through from one space to the next. We are crowded, cramped, crazy. Our life is under construction, and at times, it is difficult. Nothing is easy. But my husband and I continually remind them of the end goal—a new, shining, spacious home.

We are giving them hope. Reconstruction and demolition and rebuilding and renovation are hard work. None of those are comfortable to live through. I know…that’s what I’m living through now. This past year has been full of destruction and chaos, and it is impossible to see some shining goal at the end of all of this. But our home renovation has given my husband and me the opportunity to show our children that something good and lovely can come out of chaos.

There has been much talk of our children being “resilient” after this year. Perhaps. If we mean that they will be able to understand that life is hard. It is full of suffering and pain and the unpredictable. If we mean that we are not in control like we tend to think we are. If we mean that our choices still matter, that beauty can emerge from ashes, that there is hope.

Scientist by training, lover of books and writing and learning by nature. Wife to a talented husband, mom of three children. Proud to call the Rocket City home (Huntsville, Alabama). Pursuing my love of creative writing by writing about everything from school buses to the latest in pandemic schooling.

Twilight star Kellan Lutz and wife Brittany recently announced the birth of their baby girl! The new parents posted sweet pics on Instagram last Friday, with a special message about their daughter.

Lutz and his wife welcomed Ashtyn Lilly Lutz on Feb. 22, after a long road to parenthood. Last year the pair had a devastating loss—six months along into Brittany’s pregnancy.

In February of 2020, Brittany wrote a candid IG post about the loss, her supportive husband, and the medical staff and blood donors who saved her life, “I’m not ready to talk about what happened, and I’m not sure I ever will. But I can say I am SO grateful for the most amazing husband who’s been by my side the entire time. I have the best most supportive family. The prayers from friends have meant everything. My incredible doctor and the amazing team at UCLA Medical Center who kept me alive are the real MVPs. And to all of you who donate blood- I have never been more grateful for you. Without you people like me wouldn’t be here. ”

Just over one year later, Brittany welcomed baby Ashtyn, posting, “The day she came into the world it was snowing, raining, and freezing, but that night she was born and we woke up to sun, clear skies, and winter melting away. It was so symbolic considering this time last year was literally winter for our souls only to be met one year later with the brightest sunshine. She ushered in a new season for us and we love her beyond comprehension.”

Congrats go out to the happy couple on the birth of their daughter!

—Erica Loop

Featured photo: Alex Millauer / Shutterstock.com

 

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